Category Archives: guest post

Guest Post: Sex and Scoliosis

This is a Guest Post by Atlasien. It was originally published here.

I’m a multiracial Asian-American woman, Southerner, third-culture kid and mommyblogger. I’ve been living in the Atlanta area for more than a decade now. I mainly blog about race and foster care adoption. My husband and I have a 7-year-old son that we adopted as an older child. I enjoy this blog, and I’ve learned a lot of important stuff about disability issues by reading here.

What does scoliosis have to do with sex?

There are a lot of connections. I guess I’ll need to start by explaining scoliosis. It’s a common disorder, but one that is often very misunderstood by the general public, as well as many non-orthopedic doctors. Most people vaguely remember a scoliosis check from their school days. Sometimes the kids are lined up in a row, and told to take off their shirts and bend over while a medical professional inspects them from the back. The experience is obviously rather humiliating and tends to cause a lot of nervous laughter.

Scoliosis — a sideways, left-right asymmetry of the spine — is the most common form of spinal deformity. It can also be accompanied by other forms of spinal deformity, like kyphosis (AKA hunchback) and extreme lordosis (AKA swayback). It sometimes comes as a package deal along with disorders of connective tissue, or with cerebral palsy and spinal bifida. In those cases, scoliosis is often diagnosed at a very early age.

The other kind of scoliosis, the much more common kind, seems to come out of nowhere. It’s known as adolescent idiopathic scoliosis or AIS. “Idiopathic” is from the same Greek root as “idiot” and basically means “we have no idea what causes it.” Though recent research has shown that it’s actually genetic, and they’ve even tracked down the genetic location (but only if you’re white, which is bizarre, because there isn’t any significant racial/ethnic difference in prevalence rate). Someone with this kind of scoliosis (usually a girl, as the incidence of more serious curves among women is 7-10 times that of men) is born with a normal-looking spine. Before puberty, the spine begins to bend and curve. Maybe it stays there… maybe it gets worse through puberty. Then maybe it stays there, or maybe it gets a lot worse close to menopause. Without major surgery, it’s essentially a one way road. In scoliosis vocabulary, when curves get worse, it’s called “progression”. “Progression” is bad. Arresting progression is good.

According to this NIH resource, “Of every 1,000 children, 3 to 5 develop spinal curves that are considered large enough to need treatment.” If you adjust for sex, the rate climbs up to almost 1% of all girls. I don’t know of any source that says actually how many girls receive treatment of which types. Treatment means to watch, take lots of x-rays, determine progression, and if it looks like progression is, well, progressing, to brace. Or in very serious cases, go directly to spinal fusion.

A pre-teen girl, front and back view, with her face obscured.  She has a metal brace that has one rod running up the front to a metal collar, and two rods in the back.  There is a fiberglass girdle across the abdomen and down to the hips.  There is a strap hooking to both sides of the metal rod in the front.  Descriptive text provided by Don.

That’s the “Milwaukee” variant of brace. It’s the kind I had. It’s made from hard plastic and steel. It’s expensive, ugly, frightening, and extremely uncomfortable. The family nickname for my brace was “The Iron Maiden”. You can climb into it and strap it on and off, and adjustments of the screws will accommodate changing body shape during puberty. I think you’re supposed to wear it until a few years past puberty, when your spine growth finally halts. The brace is an old form of treatment and it’s shown to be moderately effective at arresting progression.

Three images of the back of a young woman.  In each, there is an obvious curvature of her spine.  It's an S-style curve.  The middle portion of her back, around the shoulder blades, is off-set to the right, while the shoulders and hips line up relatively evenly.  Descriptive text by Don.

Many girls experience horror and anger when they find out what bracing is going to mean for their lives, and that it won’t even fix them, it will just probably keep them from getting any worse.

It was easier for me to accept my fate. First of all, my mother also has idiopathic scoliosis, and her curve was fairly serious. Hers is comparable to the woman pictured above. She had not been treated as a girl, and her scoliosis had slowly progressed as she went into middle age. She eventually had a spinal fusion — two long steel rods screwed into her spine — and was in the hospital for two weeks. So I had a strong motivation to make sure my curve didn’t progress as far as my mother’s. She was also a positive role model for me. I saw her as an active, glamorous woman who refused to be limited by scoliosis. I tried to adopt the same stoic attitude toward my own scoliosis. Second of all, my orthopedist said it was OK to only wear my brace 12 hours a day, which meant I slept in it, but I didn’t have to wear it to school. I think he may have subscribed to the philosophy that although the brace should really be worn 23 hours a day, there’s so much social stigma attached to it that many girls rebel, and won’t wear it at all, whereas a private bracing regimen has more likelihood of consistent follow-through.

I don’t know if it would have made school any worse. I’ve written before about the extensive racist abuse, and sexualized racist abuse, I got in late elementary and middle school.

I was harassed so much in the locker room my first year of middle school that I refused to change my clothes at all. P.E. was a living nightmare full of verbal attacks and physical threats from larger girls. I spent much of my time desperately thinking of ways I could get a medical excuse. Unfortunately, aside from my scoliosis, I was healthy as a horse. I refused to participate in activities anyway, and sat with the asthma-sidelined section. I’m still bitter about this experience because it taught me to associate healthy athleticism with emotional trauma and racist bullying. Maybe if I’d had my brace on, I could have gotten my coveted medical excuse.

It was something I never, ever thought of at the time, though. The orthopedist’s word was the word of law. And the brace was something to be hidden. I think this is a common tendency among brace-wearers. Girls that age don’t want to be seen in a brace. For photos, they’ll take off the brace. If they’re told to wear it to school, they’re mocked and stared at. At the time, I considered myself very lucky that I was able to hide my brace from other kids my age.

I don’t know much about disability theory and disablism, but I’ve been reading through blogs about it, and it’s very interesting in relation to scoliosis. I don’t identify as a disabled person/person with disabilities, and I don’t think many other people with idiopathic scoliosis do. But many of us have also gone through an intensely emotional adolescent period where we’re viewed as disabled.

One of the hallmarks of disablism is that it strips away sexuality. The prejudice against disabled people includes thinking they are not supposed to exist sexually, have sexual desire or be desired.

Being braced means going through puberty strapped and screwed in to a weird exoskeleton that incarnates the negation and emprisonment of your sexuality. Your breasts and hips are starting to grow. They might start to bump painfully against the brace. So you have to visit the doctor — often an older man — who adjusts your screws to accommodate your new growth.

The brace seems anti-sexual, but it also has positive sexual connotations. The light at the end of the dark tunnel is that the brace will “keep you normal”. You’ll get through puberty and enter into sexually desirable womanhood without too much spinal deformity… the brace will preserve you. The brace probably becomes the most significant physical object in your life, for good and for evil.

I certainly didn’t receive any counseling about my scoliosis. I don’t know if it’s common today to have counseling as part of the bracing process. If it’s not, it should be. Girls who have gone through bracing feel like it’s them, alone, against the world. Although it’s quite a common experience, by medical and social tradition, the disorder is isolated and hidden.

This study showed that bracing doesn’t affect self-image much. However, it also takes places in Sweden, where school environment I’m sure is quite different than in the U.S. This other U.S. study tells a somewhat different story: “Scoliosis was an independent risk factor for suicidal thought, worry and concern over body development, and peer interactions after adjustment. CONCLUSION: Scoliosis is a significant risk factor for psychosocial issues and health-compromising behavior. Gender differences exist in male and female adolescents with scoliosis.”

After bracing, scoliosis, and deformities of the spine in general, become almost invisible. It’s extremely rare to have a spinal deformity so pronounced that anyone can tell by looking at you when you have clothes on. People with idiopathic scoliosis “pass”. People have known me for years, even decades, without knowing I had scoliosis. Then one day they’ll see me in a bathing suit — and not even the first time they saw me in a bathing suit, but maybe the first time they really focused on my back — and they’ll burst out with something like, “OH MY GOD DID YOU KNOW SOMETHING IS REALLY WRONG WITH YOUR SPINE!!

Once it stops being invisible, it’s all of a sudden very, very visible. I guess it’s sort of like shaking hands with someone and suddenly realizing they have six fingers.

If I’m not experiencing any back pain, I rarely think about my scoliosis, although I sometimes worry about my future. Pregnancy is not a risk factor for progression, but menopause is. Right now, my thoracic curve is 36 degrees. If it gets past 40, I might need spinal fusion surgery. This is a mostly safe procedure, but it’s still really scary, and involves weeks in the hospital. Click on the following link if you’ve seen enough David Cronenberg movies that you think you can handle it (link to nightmarish spinal fusion surgery image). Spinal fusion partially reverses the curve, arrests or slows down further progression and relieves chronic pain. You’re still reasonably flexible afterwards, but there are potential complications, and I’m not considering surgery at this stage. If I refused surgery, and my curve happened to progress further, I would start to have more pain and diminished lung capacity. Past 60 degrees, I might start to experience severe and constant pain in my back and/or ribs, and my internal organs would get squeezed together and I might start to have breathing problems. Past 80 degrees I might have lung AND heart problems.

But I don’t stay up night worrying about the risks of progression. Many people have more uncertainty about their medical future than I do. For example, if I had diabetes, I might worry about having a foot amputation.

Since I grew up with scoliosis, it’s taken me a while to understand how it looks from the outside. Aesthetically speaking: not good. We’re conditioned to associate left-right symmetry with health and general well-being. People with moderate scoliosis, like me, often look symmetrical from the front, but asymmetrical from the back, and I suppose that seems eerie and perhaps even deceptive and sneaky. There’s a lot of really negative associations in popular culture (e.g. Hunchback of Notre Dame). When mean-spirited people do “retard” imitations they’ll often hunch up one shoulder and stagger in order to simulate a deformed spine.

I don’t talk about scoliosis casually because a) I don’t have any major health problems because of it, so there’s not that much to talk about b) I’m afraid of it being used against me. I’ll put it on medical history forms when I know I can be assured of privacy. It was used against me recently when I applied for private disability insurance. I thought it would be a good idea to have a separate private policy in case I lost my job for any reason. I did a ton of research, spent a lot of time talking with the salesman, and ended up with a quote that specifically excluded anything going wrong with my reproductive system AND my back. I changed my mind and decided it wasn’t worth buying since so much of my body was apparently un-insurable. They excluded my ENTIRE BACK. Hypothetically speaking, if I got in a minor car accident, and as a result developed the exact same kind of back problems that anyone without scoliosis would develop, nothing would be covered. What a terrible deal. No thanks!

The health implications of my scoliosis are not that extreme, and I don’t need any accommodations to perform any major life activities, which is why I don’t consider myself disabled.

– I have foot pain in my arch if I don’t wear comfortable shoes. I can wear platforms, but I can’t wear high heels.
– I have to be a bit careful doing things like yoga and pilates.
– I have to stay reasonably active in order to be 100% pain-free. When I get too sedentary, I start having back pain and rib pain. If I ever had an illness that forced me to rest all the time, I’d be in big trouble. Exercise and stretching are highly effective for scoliosis back pain. Other options I would consider to control pain if it ever got worse include drugs, physical therapy and adult braces. There are a gazillion alternative health “cures” for scoliosis back pain suffering, but they strike me as being of very dubious efficacy.
– I have to watch my posture
– I have to watch my weight. Excess weight leads to back pain. Being underweight might be even worse, because being underweight is connected to bone density loss, and people with scoliosis have lower than average bone density anyway.

None of these problems are really unique to scoliosis. Plenty of able-bodied and disabled people have back pain or foot pain.

This link from Eurospine.org sums it up: “Progression of scoliosis can involve an aesthetic problem and lead to functional problems. Respiratory disorders may develop in large curves greater than 80 [degrees]. Nonetheless, the mortality rates and vital prognosis in individuals with scoliosis are comparable to those of the general population.”

It’s the “aesthetic problem” of scoliosis that’s unique. Like I mentioned before, left-right symmetry is wound up with definitions of health and beauty across many different cultures. People like me are aware of this on a subconscious or barely conscious level. 99.99% of the time I forget that I don’t fit that symmetrical standard. Every so often I’m reminded, and it feels a bit painful. There are subtle psychological effects. Vague feelings of being a secret curved impostor in a straight-backed world. Times when I feel like my spine is an enemy working against me… times when it hurts to breathe and the pain makes me feel angry at my spreading rib bones, and I wish I could reach inside of myself and squeeze them back into place. Sometimes I’m bitter about the inches of height I lost to scoliosis.

Back to sex. Even without bracing, there’s still a sexual paradox when it comes to scoliosis. Have you ever seen a picture of a woman with scoliosis and/or kyphosis that was not anonymous, depersonalized, clinical, grim and depressing? Like the photos I included above? Scoliosis is profoundly unsexy.

On the other hand, when women pose provocatively, they often throw one hip to the side and put one shoulder forward.Why is that pose sexy? Maybe it makes us look femininely defenseless and vulnerable, as opposed to a masculine, stick straight pose. That’s going along with a typical sexist definition of “femininity”. There’s another less sexist possibility… the pose is also highlighting the flexibility of the spine. So in that sense, the woman is showing off her body’s capacity by bending in a certain way.

There’s a comic book artist, Rob Liefeld, who was (in)famous starting in the 1980s for drawing unrealistic women. The conventions of drawing women are in comics are easy to criticize, but Liefeld’s stuff is… well…I guess you’d have to see the spinal curvature to believe it.

Iconic Rob Leifeld drawing of a super heroine.  She's posing facing right, turning her head over her shoulder.  She has an impossibly-narrow abdomen, and spine curvature similar to severe lordosis, an inner curve of the spine.  She is not wearing very much clothing.  Description by Don.

That’s supposed to be sexy. For the audience of predominantly young men who made Liefeld very popular, it must have been sexy. This is a funny analysis of the above drawing by a group of women comic book artists:

Take note of Avengelyne’s waist and how it is thinner than her head. Minus the hair. Note how it hangs beneath her ribcage like a suspension bridge, rather than actually supporting the top of her body. (Her torso must be kept afloat by those helium breasts.) Note the scoliosis gone grossly untreated. Note the little leather bags which wouldn’t fit around a normal person’s wrist. Especially note that the artist put her in the most obvious POSE to exaggerate the spine: a profile shot with negative space between her back and arm. That’s correct – our intrepid heroine’s spine would appear yanked. Avengelyne is a SWAYback™.

The humor is partly at my expense. But I can’t help laughing. It’s a highly sexualized image, but not one that I identify with in any way.

But here’s a poster image I ran across that uses stupid sexist humor to make fun of a real woman, and I don’t find it funny at all.

A woman is facing straight on the camera, with her weight obviously all on one side.  She's curved her body to look like an S.  Text reads: Scoliosis: Making an otherwise beautiful girl look pitiful.  Image is from Motivated Photos.com, description by Anna

It really illuminates the double standard that women are subjected to. You’re supposed to be sexy so that you please men. But if it looks like you’re trying TOO hard, men (and other women) will make fun of you. If you don’t wear makeup, you’re a [insert homophobic slur]. Wear too much makeup, you’re a [insert transgender-phobic slur]. Curve your back, look sexy. Curve it too much, it looks like you’re deformed. Argh!

Thanks to my brief readings of disability theory, I realize that making fun of people with spinal deformities isn’t something I should just accept as the natural order of things, especially because this humor is connected to moral judgments of disability. That is, the idea that physical body difference reflects some kind of moral failing. When it comes to scoliosis, I think the general public halfway believes that scoliosis is the fault of the person’s family. There’s a myth that giving young kids backpacks that are too heavy will make their spines curve (totally not true). When people are adults, “she should have had that corrected” is sometimes an assumption. A lot of people don’t realize that the only sure way to even partly reverse a curve is spinal fusion, which also leaves a giant seam-scar running up your back. Another judgment is that a person with scoliosis must be poor. It’s true that I’m very lucky I had access to bracing; if I wasn’t born into a middle-class family in a rich country, my curve would be a lot worse by now. So there are major class differences in scoliosis, but ultimately, we’re all in different positions on the same boat because there is no way to permanently and completely reverse adult scoliosis.

Thanks to flickr, I did actually find some images of scoliosis that I think are beautiful and help affirm positive self-image and sexuality. I wish I’d found a greater variety of body types, but these images are great to start off with. Some are post spinal fusion.

First, here’s the typical clinical picture. It shows everything that’s wrong with the body.

A woman is facing away from the camera, with arrows pointing to various parts of body to describe them.  Head not centered over body.  One shoulder (right) higher.  One shoulder blade (right) higher and possibly more prominent.  Spine obviously curved (to the left).  One hip (left) more prominent.  Unequal gaps between the (left) arm and the trunk.  Description by Anna

Now here are the flickr pictures. They show the open possibility and vitality of a body with scoliosis.

Man with scoliosis facing away from the camera.  Someone has drawn his spine on his back with make up.
black and white photo of a woman facing away from the camera, wearing only a towel or blanket.  Her spine is curved, and her scars are visible.

man facing away from camera.  The photo is in a mirror.  One can see both his scoliosis scars from surgery and his elaborate arm tattoo.

woman facing away from the camera.  She is caught in the middle of dropping an apple behind her back, both arms curved behind her.

woman facing away from the camera.  The image is otherwise in black and white, except for her vivid red hair and lips.  She is wearing a black dress with part of the back cut out.  It clearly shows the curve of her spine.

photo is in black and white of a woman's lower torso, with a pronounced rib-cage and a pierced belly button

woman facing straight on the camera.  She is wearing both a brace, as described above, and a purple corset.

woman facing left from camera, with back facing camera.  She's wearing an back brace, and balancing on a small ball.

It’s heartening to see a bunch of pictures like that. There are more photos at this link.

When I walk, my right hip swivels a bit higher and wider than my left hip. I’ve had people tell me it looks sexy. I’ve had people ask if I’ve hurt my foot. Neither reaction bothers me anymore. The way I walk is just the way I walk. It gets me where I need to go.

Acknowledgements for this post: thanks to Thorn for commenting about this issue, and mentioning how it negatively affected your adoption homestudy due to ignorance on the part of the social worker. Also thanks to Deesha Philyaw on Twitter for mentioning the Judy Blume book about a girl who goes through bracing: Deenie. I wish I’d gotten a chance to read that book when I was a girl, and it sounds really interesting.

Guest Post: Davros, Daleks, and Disability

CapriUni has cerebral palsy. She grew up with, and alongside the Disability Rights movement. She was among the first of her generation to be mainstreamed in education, in starting in the late 1960s, she completed the Masters of Arts program in Creative Writing at SUNY Stony Brook in 1991. And she has been a regular participant in the theatrical and literary endeavor known as The Art Garden for many years. She currently lives in Virginia, where she spends much of her time geeking out on her DreamWidth Journal over the topics of language, disability rights, and general silliness, but not necessarily in that order.

This post was originally written in June 2009.

This post wanders down a primrose path of links — or maybe it makes a daisy chain of links (maybe the all those flowers are fertilized by the BS the essays in these links complain about).


Almost a year ago, I watched again, for the first time in nearly thirty years, Episode Two of Genesis of the Daleks (the one where we first see, and hear, Davros) and wrote this review: I know that this episode predates this PC-ness by about ten years, but still. I tried to articulate how painfully ableist Davros is/was (it might have helped if I’d had the word “ableist” in my vocabulary, back then). But the discussion thread wandered off into Nazism, racism, anti-Semitism, and the internalization of oppression by the oppressed — all are important topics, but Davros’s disability ended up being treated (even by me, woe) as a secondary metaphor for some other issue, and not as an important attribute in its own right (which is another of my long-time pet peeves).

Then, earlier this week, [info]troubleinchina watched Genesis of the Daleks for the first time, and she wrote this review: Davros is not a physically handicapped scientist overcoming his “shortcomings” through technology (the link she posted in that review, btw, to an essay about the cybermen, has been taken down by the author).

In reply to that review, Goldfish (the host of “Blogging Against Disablism Day”) posted this: It would be better if we were represented as a great variety of characters, but Davros did at least have some … spirit.

And she posted this link (from the BBC’s official Disability Culture Blog: “Ouch!”): ReTARDIS: Doctor Who and Disability (written on the eve of NewWho, and expressing the hope that RTD would help Who get beyond its old biases; shall we have a moment of silence for our dashed expectations?).

And finally, I’ve come to the end of my primrose path. For there is one paragraph in this last blog essay clarified for me why I preferred the Daleks before they had Davros as their single, twisted, “Creator”:

To cut a long story short, Davros foresaw that his entire race, the Kaleds, were slowly turning into slimy, green blobs. Being a wheelchair user himself, his solution to this problem was to build mobility aids for everyone to travel around in – a.k.a. the Dalek machines. Now you’ve got to admit, turning your entire race into wheelchair users is quite an extreme way to bring about disability equality!

I realized, when I read this, that I was (partially) incorrect in my original analysis, last June. What’s really promblematic about Davros is not (so much) that his “spiritual disfunction manifests as physical disfunction,” but that he diliberately creates the Daleks to be more disabled than he is. He deliberately erases their capability for empathy and compassion. He expects them to be obedient to his every command, and to be grateful to him, as their creator and their “father.” If Davros’s plans unfolded the way he dreamt them up, he’d be the most able-bodied (comparitively) “Emperor of Skaro.”

So, with Davros in the picture, the Dalek mythos only perpetuates and reinforces the hierarchy of Ability and Personhood. The more able you are, the more you’re a “real” person. If you’re disabled, your role in life is to be obediant and grateful, and the more “severe” your disability is, the more passive and grateful you’re expected to be.

But pre-Davros, in the First and Second Doctor’s eras, the Daleks had created their machine casings over time, and under their own initiative. In the Peter Cushing movie versions of William Hartnell’s Dalek stories (thanks again, [info]gordon_r_d!), the Dalek city is full of color, and art for art’s sake. Even though they’re still evil, they’re portrayed as having a complete culture, and being complete people. So yeah, I find the pre-Davros Daleks to be more interesting.

As for the argument that Terry Nation had to create Davros to give the Daleks some unique history compared to the Cybermen, I’d say that both the Cybermen and Daleks represent the abject fear that the Privileged have of the Oppressed:

“They Hate Us!! And if We Give Them Any Freedom, They Will Bring Us Down to Their Level!!”

The Daleks and Cybermen are “mechanized” selves, who have gradually lost their Personhood as they gradually lost their physical abilities, and compensated for their weakness with technology. This, in itself, makes them morally suspect, at best. What makes them evil is their desire to inflict their reality on the rest of us, “robbing us of our humanity.”

Other modern sci-fi examples of this trope would be, I think, Hitchcock’s The Birds (where humans are punished by the avians for our species-based privilege), and Franklin J. Schaffner’s (director) Planet of the Apes (again, with species privelege, with added thinly disguised race privilege). But this trope goes back much further than the genre of Sci-fi, if you consider the ancient (patriarchal) Greeks’ fear of, and fascination with, the Amazons, and what they did to men.

This fear and fascination probably arises out of the subconscious knowledge that:

  • privilege is arbitrary and more a matter of luck than innate goodness, and
  • the acts committed via this privilege are unjust, but
  • the privilege-holders are so dependent on the power of privilege for their way of life that they equate letting it go with Death.

And of course, this fear completely distorts reality. Birds have no desire to wipe out humans as a species. Nor do Apes wish to own human slaves. Women don’t want to castrate and enslave men.

And the disabled have no desire to inflict their impairments on the able-bodied. Christopher Reeve’s advocacy for “The Cure” made me squrim, but I took no pleasure in his suffering. I was simply distressed when his advocacy, and the celebrity status that fuelled it, drowned out nearly all discussions of civil rights and equality.

[I’ve been writing this post on and off (mostly on) for nearly six hours, now (I thought it was going to be a quickie; I didn’t expect it to be so hard to put into words). It’s time I stopped. Here’s my conclusion:]

Davros is a painful character for me to watch because he represents the fear that the Disabled are full of hatred — both self-loathing and hatred of the able-bodied, and is another example of the fearful trope:

“They Hate Us!! And if We Give Them Any Freedom, They Will Bring Us Down to Their Level!!”

(So We better get Them, before They get Us).

I don’t want to bring you down, able-bodied white men, staring at me from the bed of your pick-up truck,* please don’t stare at me with such virulent hatred.


*I’m remembering an actual time when I was leaving the grocery store with Audrey, my aide. This was when I had the old van, with the slooow wheelchair lift, and I was manuevering to get onto the lift. Meanwhile, there were four red-necky-type white guys hanging out in their truck in the next parking space over. And they were staring at me with such angry expressions, I couldn’t look them in the eye. If I’d been alone, I would have feared for my safety. Yes, this was one moment out of my lifetime, and it was atypical in its extremity. But it still sticks in my mind, and it’s still painful.

ETA November 29: I’m temporarily turning comments off on this post because it’s become some sort of magnet for very strange and repetitive spam. I’ll turn them back on in the future. If you come across this and want to make a comment, please let the mods know.

Guest Post: Disability and Asexuality

Kaz is a German woman in her twenties, currently doing a maths PhD in the UK. She is on the autistic spectrum, stutters, and has been dealing with clinical depression on and off since her teens; she considers all of these disabilities. She is also aromantic-tending-towards-homoromantic asexual and identifies as queer. She blogged as Zailyn at WP for a while, but can now be found at either Dreamwidth or Livejournal, where she writes about fandom, disability, feminism, asexuality, and sometimes even maths.

Kaz’s note: First of all, this is not a 101-level post on either the asexuality or the disability side of things. However, I’m aware that asexuality isn’t really an issue that is on most people’s radars, so to anyone who doesn’t know much about it I suggest you check out AVEN in general and the Wiki in particular before reading or whenever you run into something that doesn’t seem clear.

Mod Note: Kaz & I talked and I’ve put in some links to terms as they come up.

A list.  The header reads: What is your Sexual Orientation?  Typed underneath with check boxes is Heterosexual, Homosexual, Bisexual.  Written in, with a hand-drawn check box, is other.  The check box is filled in next to other

Talking about the intersection of asexuality and disability is pretty difficult, because “asexuality” gets another meaning in disability rights discourse: it’s used to refer to the various stereotypes about disabled people’s sexualities. People do often seem to realise that this is problematic when it’s pointed out to them. However, what not so many people realise off the bat is that it goes beyond just “problematic”.

The stereotypes in question actually consist of a wide variety of things tossed together, some of which are in line with asexuality but many of which seem to have little to do with asexuality or in fact to be entirely opposed to it (I am interested to see how the stereotype of the disabled woman not saying no because she feels lucky anyone wants her is supposed to relate to asexuality, for instance). What they have in common, however, seems to be: denying disabled people their sexual agency and the right to make decisions or have knowledge about their own bodies and sexualities. The stereotypes about disabled people’s sexualities seem quite in line with the common tendency to consider us childlike, helpless and needing to be protected for our own good.

Asexual adults? Are not children. Nor do we (or, at least, should we) lack agency. In fact, the very existence of the asexual movement shows that we are in opposition to a lot of these ideas! We’re organising, we’re campaigning, we’re demanding that our sexual identity should be recognised and considered valid; disabled people are stereotyped to not have a sexual identity at all. (There is a distinction between the lack of a sexual orientation and a sexual orientation incorporating lack of sexual attraction that most people miss, but that is crucially important in this context.) Taking all the stereotypes disabled people get hit with regarding sex and sexuality and claiming that they all boil down to making them like asexual people? Like me? Is something I actually find really offensive.

An example: the desexualisation of disabled people often gets used to justify giving them less extensive sex ed or no sex ed at all compared to abled people. However, saying this is because they’re stereotyped as asexual entirely misses the fact that – asexual people need sex ed too! At the moment, it’s true that a lot of us will probably need it less than most sexual people, but it is still necessary as a large portion of asexuals do end up having sex at some point in their lives. Also, if mainstream comprehensive sex ed ever gets away from the “put the condom on the banana” “tab A slot B” style of sex education and starts talking about things like sexual orientation, explicit consent, how to figure out whether sex is the right decision for you at a certain time, etc. – I’d argue that we need this kind of sex ed more than many sexual people, as being a sexual minority tends to lead to more confusion and needing to figure things out. (There’s a traumatic experience I could have happily avoided if sex ed ran more in this direction.)

Also, using the name of my sexuality for these stereotypes obscures the fact that actually, they have negative effects for me, too. For instance, there is an astounding amount of ableism in the arguments people use to try and invalidate asexuality, ranging from “you should get your hormones checked!” over “that’s a disability, not a sexual orientation” to “you’re just all autistic!” You can imagine how the last one feels to me as an asexual autistic person! Worse, parts of the asexual movement buy into this and will talk about how they’re not autistic, their sexuality is valid – unlike mine, apparently?

…hey, I recognise this argument! But wait a minute, we can’t very well call it stereotyping disabled people as asexual if it’s being used to invalidate the sexualities of asexual people.
Continue reading Guest Post: Disability and Asexuality

Guest Post: To Whom It May Concern

Avendya is a college student with a chronic illness.

To Whom It May Concern:

My life is not a fucking tragedy.

No, really. Yes, I’ve fought with GlaxoSmithKline today, and I’m not sure when I’ll get a medication I badly need. Yes, my knee keeps giving out, and I am barely able to keep up the stairs to my room. Yes, I’ve broken so many times in the last week I’ve last count. No, I’m not sure that I’m really well enough to manage my workload. But you know what? I’m sitting in a computer lab with my best friend, listening to trashy German pop music, and Nadia made me brownies.

These are the stories I want to hear about: not just the tragedy of suffering, not just pity and playing on able-bodied people’s fears, but my life – our lives. I want to see a fictional character who has mobility issues who isn’t a tragic figure, but is clever and beautiful and could probably kick your ass without breaking a sweat. I want to see a story where the love interest isn’t a nice (white) girl, but a woman who’s gone through hell, and is stronger for it. I want to hear stories of disabled men and women succeeding – and not “in spite of” their disability.

I choose to define my life on my terms – not just the bad days, the panic attacks, the times when no pain medication I try even cuts into the pain, but the days where I say “screw it” and explore cities on my own, take in the breeze off the Bay, buy more books than I should, and listen to Imogen Heap as loud as my iPod will go. I may have not chosen my illness, but I damn well chose the rest of my life. I don’t much care if it isn’t what you were expecting from a disabled person – this is my life, my future, and I am not your fucking cliche.

I want to see, hear, read about people like me, living their lives on their own terms. We’re not martyrs and we’re not saints – we are people. More than that, we are – we exist, and no matter how many times our needs are disregarded, our stories are erased, we refuse to let you define us.

Guest Post: Negotiating Disableism

This is a guest from from Renee of Womanist Musings.

Disableism is very new to me. My chronic illnesses not only changed my status, but forced me to see just how pervasive ableism is. It has been a huge learning process, as I have sought to reduce the ways in which my language and behaviour support ableism. I have a physical disability which has caused me to more aware of the ways in which society is structured to benefit those that are able bodied, but it has not helped me to understand the ways in which those that are neurologically atypical face discrimination. Common phrases that I used to utter like bat shit crazy, must be erased from my vocabulary. I have struggled not to say that someone is blind to something, rather that pointing out that they are unable to see or understand.

What I have learned is that ridding oneself of disableism, is a process that is not easy but so very necessary. Each time I am reduced by the assumption of another, it causes me to examine the ways in which my language or behaviour support this. It took time to understand that though I am disabled, I still exist with privilege in certain areas. I can hear, I can see, I can get up and walk if I have to, I have all of my limbs, and people do not dismiss what I am saying because they deem me non-sensical due to being neurologically atypical. As long as they are not referring to my specific disability, many are quite comfortable displaying their disabliesm, as though it does not effect me.

I have sat and listened to the complaints regarding the accommodations that those who are disabled must have to participate in society. While most will not scream and carry on about a ramp, even a small thing, like getting more time to hand in a paper at school, is enough to cause a rant about favouritism and unfair standards. Disableism occurs when people feel as though they cannot take advantage of their able bodied privileges. It occurs when people resist that a task can be completed differently to allow a greater participation.

This weekend, on the way to Destructions hockey game, I ran into an old friend. She had not seen me since I contracted my illnesses but her first comment was that she had to get herself a scooter. To her it seemed a cool toy, while to me it is a reflection of all the things I cannot do. There is a man in my neighbourhood who uses a manual wheelchair and he has commented on more than one occasion, that he wished he had a motorized scooter to get around in. Though I am hurt by the ableist comments of a former friend, my class privilege is part of what allowed that pain. When I needed a scooter to facilitate my activities, we were able to afford one.

Though I am differently abled, I am barely at the 101 level. I went through anger, denial and finally acceptance but negotiating this life is something I must begin again like a newborn babe. I have isolated myself because I viewed my body as the great betrayer, refusing to see the ways in which I could and can still participate. When someone is racist against me, it is easy to find my voice because this is something that I have lived with all of my life, whereas; disableism, even when clearly directed at me, brings about silence and sense of shame. For now I count on the unhusband to speak when I cannot and this again is a marker of how blessed I really am. Even in times of weakness and sorrow, I can count on my family to do the heavy lifting. When I need comfort, each one of them is quick to run to my aid. They may not understand what I am feeling but my pain is enough for them to intervene or try to comfort.

I have learned that disableism cannot be reduced to a simple Black/White binary. Even as I struggle against it, I perpetuate it. Just as we understand that society is inherently racist, classist, or sexist, it is also highly ableist. If this were not an absolute truth, the various barriers that block or limit participation would not exist. My task is to now unlearn that which I have accepted as truth. For me it becomes difficult when I begin to look beyond the limited experiences I have had as a differently abled person. There are issues of race, class, gender and even differing abilities to contend with. This task would not be so difficult today, had I made a conscious decision to acknowledge my various privileges in the past. I allowed my privilege to dictate what I learned and studied, thereby reinforcing the very hierarchies that I claimed to struggle against. Today I understand is that there is no universal experience and it is this very rainbow of difference that I must commit myself to embracing.

Guest Post: Why I Say I’m Okay

Arwyn lives in the United States’ Pacific Northwest with The Man, the Boychick, bipolar type 2, and migraines. When the intersection of her neurology and the kyriarchal society she lives in allows, she writes feminist thoughts inspired by parenting a presumably-straight white probably-male at Raising My Boychick.

Arwyn previously wrote a guest post for us: Why I didn’t celebrate World Mental Health Day.

I am a very out person about my mood disorder. I wrote about it and talked about it in all my college applications and interviews; I mention it to everyone I know whenever relevant (and it often is); it’s in my bio here and on most social networking sites. I am an advocate for openness, for honesty, for forthrightness, for being out and proud as a person with a “mental illness.”

And yet, if you ask me how I am on any given day — even today, even when my sanity and stability are more potential and historical than current and actual –, I’ll probably say I’m OK. If you’re close to me, I might also tell you what’s going on today; if you know my mood history, I might tell you how else I’ve been feeling recently. But whether with a “more or less” appended to it or not, I will start with, and likely end with, “I’m OK.”

Why?

It is an affirmation; a statement of intention; a prayer to the universe. The more I say it, the more true it is likely to be — and oh do I want it to be. I need it to be.

It is a philosophical statement. Fundamentally, I am OK. I am privileged to have a comparatively easy life, with an understanding partner, a beautiful shining child, and the resources to do most of the things I need to do to be OK in the long run.

It is a temporal anomaly. I live in the moment; most of the time, I try to remember that, and it is especially important to do so when I my mood has not been stable. When you ask how I am, if you are worthy of an honest answer, I take a deep breath, center myself, and probably find that in this moment, I am OK. Stable? Not so much, but stability is a product of well-being over time: in the now when you ask me, I am OK (if you are a person who cares about me, you asking and caring about the answer may be enough for me to be OK in that moment). Now is all I ever have; now’s okayness may be the only answer you will get.

And, it is protection. I do not always have the spoons to let my mask down, to let you in — even if you love me and I love you –, to get into all the ways I might not be completely OK. Answering any other way might make me not OK, and frankly I’m tired of being unwell — bone-deep, wish-I-could-weep, wanna-sleep-until-it-goes-away-for-keeps tired of it.

None of these should give you the feeling you have any right to a different answer; none of these should leave you thinking “I should just push harder, she’ll let her guard down and admit her damage if I just say ‘really?’ skeptically enough.” I will tell you I might answer differently to “how’ve you been?” or “how’s life going?” or “how has that blighter bipolar been treating you today?” But I might not.

I have the right to be OK; you do not have the right to demand the laundry list of all the ways I’ve fucked up today. Talk with me: I’m an open kind of gal, and if I’m up to it and you’re open to it, odds are good you’ll eventually hear all about what’s been going on with me. But if we’ve just started talking, and you ask how I am? If you love me, if you purport to care about me at all, let me say I’m OK, and let that be enough for you.

Guest Post: Why I didn’t celebrate “World Mental Health Day”

Everyone, please welcome our first guest poster, Arwyn of Raising My Boychick. Arwyn lives in the United States’ Pacific Northwest with The Man, the Boychick, bipolar type 2, and migraines. When the intersection of her neurology and the kyriarchal society she lives in allows, she writes feminist thoughts inspired by parenting a presumably-straight white probably-male at Raising My Boychick.

When I heard Friday night that Saturday October 10 was World Mental Health Day, I was excited: another day like Celebrate Bisexuality Day, but for us crazy folk?? Sign me up! When I Googled it, however, this is what I found:

World Health Organization:

Mental, neurological and behavioural disorders are common in all countries around the world, causing immense suffering and staggering economic and social costs. People with disorders are often subjected to social isolation, poor quality of life and higher death rates.

Bellevision Global (a parish in the United Arab Emirates — particularly look at the pictures on this site, if you are able):

Mental illness such as anxiety disorders, major depressive disorder, bipolar disorder and schizophrenia, if not properly diagnosed and treated would lead to poor work performance, family disruption, and contribute greatly to the global burden of disease.

Emax Health:

[United Nations Secretary-General Ban Ki-moon] states, “Mental disorders contribute to more disease burden and disability in developing countries than any other category of non-communicable disease, yet only a small minority of people with mental disorders in these countries have access to mental health services.”

Well ain’t that just fucking cheery. Thanks ever so much for the pathologization folks; there can never be enough support for the “those crazies = horrible miserable burden on society!!1!” meme.

To be fair, there was some good coverage as well. From the World Federation for Mental Health:

“Today, we call on all governments and partners to include measures for mental health in efforts to achieve human development and respond to humanitarian crises,” Ms. Obaid said. “Mental health is central to human dignity.”

See the difference there? How the first three talk about how those people (that’s me, gentle reader!) affect the rest of us (that’s all you normal, sane, not-crazy people; you know, the ones that matter)? How they say the reason “mental illness” needs awareness is because they (still me!) are a burden, a drag, a fiscal drain? And then how the last one is based on the radical idea that, gee, we are actually people and we matter too? Tiny difference there, don’tcha think?

If you’ve been following along, you know that I’m not in the greatest head space right now — to say the least. And yet, silly me, I still expect that when a group (or a day) purports to be helping me, to be bringing awareness to my needs, I not be dehumanized, pathologized, Other-ized, and victimized once again. I expect that it be recognized that my dis-ease, my dis-ability, arises from the intersection of my being and the kyriarchal society I live in. I expect to not be confronted with still more language and images that portray me and mine as miserable, sick, taunted, shunned, hated, and ignored. (Are we those things? Yes, in this fucked up kyriarchy, we are. But we’re also joyful, healthy, embraced, befriended, loved, and celebrated, and we damn well should be portrayed that way too. The constant portrayal of us as stigmatized contributes to our stigmatization.)

So no, I did not celebrate World Mental Health Day, because it was just World Fuck Over the “Mentally Ill” Day, which makes it different from the other 364 days a year… not at all.

Wake me up when it’s World Mad Pride Day. That, I think I can get behind.

This post is being moderated by the FWD staff.